APPENDIX 3
Memorandum from the Royal Society of Edinburgh
1. The Royal Society of Edinburgh (RSE)
is pleased to respond to the House of Commons Science and Technology
Inquiry into Human Reproductive Technologies and the Law. This
response has been compiled by the General Secretary, Professor
Andrew Miller and the Research Officer, Dr Marc Rands, with the
assistance of a number of Fellows with considerable experience
in this area.
2. The specific terms of reference identified
by the Inquiry are now addressed below.
To consider (a) the balance between legislation,
regulation and reproductive freedom; (b) the role of Parliament
in the area of human reproductive technologies; and (c) the foundation,
adequacy and appropriateness of the ethical framework for legislation
on reproductive technologies
3. Britain is a pluralistic society with
the benefit of free speech and many people who comment on these
issues either state a "scientific" view or are suspicious
that someone is taking a decision about what they, the individual,
can or cannot have without their being able to influence it. There
is also the belief that medical interventions are being withheld
because they are expensive, ie it is cost-cutting that is the
driving principle and that mention of safety and effectiveness
is merely a cloak for saving money. This demonstrates the problem
that faces any government body in making centrist decisions for
the sake of consistency and fairness. However, the UK has a long
and valued reputation for its attempts at national consistency
and reduction of unequal access to education, health and housing,
and the pursuit of fairness should continue to be upheld. Therefore,
it is necessary for the government/parliament to take decisions,
or create mechanisms by which such decision are taken, that regulate
what is provided.
4. However, if the UK is to keep up with
the rapidly changing theoretical potential of reproductive technologies,
then legislation is counterproductive, beyond existing common
law and human rights about respect for individuals, because it
is slow and cannot adapt in the interests of the public to changes
in what is available for them. Legislation should be restricted
to setting up a visible and open process for public and professional
consultation to advise a nationally appointed body that must have
the responsibility of arbitrating in the light of what is available,
effective and acceptable to a reasonable cross section of UK society.
Instead, to maintain justice, regulation is more adaptable than
legislation to variations over time and place in what interventions
are provided. It is the best way to integrate state, public and
professional knowledge and beliefs.
5. In terms of reproductive freedom, when
it is said that there is a human right to found a family, the
"right" is a liberty. It does not necessarily imply
that there is a reciprocal duty on the part of a State to assist
in procreation. Of course, a State might legislate to this effect
and give itself such a duty, but this is quite different from
saying that there is a human right to assisted procreation. Therefore,
it does not follow from the fact that expensive reproductive technology
exists, or may exist, that the public can use human rights to
demand that it should be used to benefit them.
To consider the provisions of the Human Fertilisation
and Embryology (HFE) Act 1990 in the context of other national
and international legislation and regulation of medical practice
and research
6. The HFE Act 1990, as eventually passed,
had a long and somewhat difficult history, with the result that
the Act was probably better honed than most relevant declarations
and statements by international bodies, which in contrast have
seemed to be rather hasty "gut reactions". Whilst it
is sensible to note such statements, their weakness as well as
their strengths should be recognised. The Act, should however,
be tested for its compatibility with the rights contained in the
European Convention on Human Rights.
To consider the challenges to the Human Fertilisation
and Embryology Act 1990 from (a) the development of new technologies
for research and treatment, and their ethical and societal implications
and (b) recent changes in ethical and societal attitudes
EMBRYO RESEARCH
7. HFE Act allows for the storage of good
quality surplus embryos, and these are sometimes used for research
(with consent). However, there is another source of embryos for
research which should also be covered by the Act. This source
consists of eggs which did not mature at the time expected by
the clinic, or where successful fertilisation by the partner's
sperm did not take place. Eggs in this category are normally discarded,
yet they could become a valuable source for research. Of course,
even if the egg donor were willing that these eggs should be discarded
as not suitable for reproductive purposes she might be uneasy
about their use in research, especially if this involved fertilisation
by sperm other than her partner's. Consent should, therefore,
be obtained even for research on material which might otherwise
be discarded.
CLONING
8. As is true in much of science, it is
the intention behind the use of the technology which should be
addressed, but all too often the technology itself is focused
on. There is nothing inherently wrong, arguably, in reproductive
cloning, although there may be "bad" reasons for undertaking
it. Of course, there are sound technical reasons not to attempt
it at present. In experimental animal studies the success rate
from reproductive cloning has remained at about 1% despite considerable
effort to increase it, and there is a high incidence of birth
defects. This being the case, there is little prospect of developing
a satisfactory technique for human cloning, since the experimental
stage would not be acceptable. However, if the technology to provide
it safely and efficaciously did exist, it would be important that
a rational and reasoned debate took place. There may be acceptable
reasons for human cloning, which might, for example, include the
creation of a child following the death of another- especially
if the intending parents are now infertile, so long as it is clear
to the parents that the clone only shares the physical characteristics
of the deceased child (and not the personality). The use of cloning
for some reasons might legitimately be banned but there may be
merit in exploring whether or not cloning is always wrong.
PRE-IMPLANTATION
GENETIC TESTING
9. The current licensing system ensures
that only adequately trained people with access to appropriate
facilities can offer pre-implantation genetic testing to patients.
It will be important, however, that the list of specific conditions
to which it can be applied is regularly reviewed, and that full
attention is given to provision for advice on the ethical dimensions
of choices to be made. Research should also be undertaken in order
to develop alternative procedures which would not involve the
destruction of the embryo, for example in the development of diagnostic
techniques involving gametes, that is, ova and spermatozoa.
10. It is not clear, however, on what basis
there should be restrictions of PGD to only serious clinical conditions,
although there may be practical reasons for wishing to do so.
If there are clinical reasons for undertaking PGD at all—and
given that the consultation document itself notes in paragraph
26 that few people are likely to choose it—there appears
to be little logic in limiting its use to certain conditions.
Of course, this balance might change if it became clear that PGD
caused significant harm in large numbers of cases. The balance
would then perhaps shift towards not permitting it in "minor"
clinical conditions because of the greater harm caused by using
it—namely the additional damage to, or destruction of, the
embryo. However, it should also be borne in mind that restricting
PGD to serious conditions might mean that the (arguably) ethically
less troubling option of non-implantation would be subject to
more rigorous controls than the (arguably) more troubling ethical
option of pregnancy termination with prenatal diagnosis (PND).
ANONYMITY FOR
SPERM DONATION
11. It is understandable that there is both
a psychological and a genetic interest in the identity of the
father. However, current human rights legislation is clear that
past donors have a right to privacy unless there is overriding
damage to another person, and each case should be judged on its
merits. The RSE therefore supports the position taken by the Department
of Health that the proposed legislation should not be retrospective.
In terms of the possibility of payment for donation, this issue
should be revisited and considered for the future.
CONSENT
12. All fertility services should require
a written consent as the consent form can provide prima facie
evidence that a discussion has taken place. This is important
in all services and not just those which currently require a written
consent. Where someone is prevented by incapacity (for example
illness or age) from consenting to having gametes or, for example,
immature testicular tissue removed and preserved, but is about
to undergo treatment that might render them infertile, and are
expected to recover, it should be lawful to remove and store the
gametes or tissue until the point at which the individual can
decide for him or herself what to do with them. This protects
the possibility of future fertility when people can be presumed
to want or be likely to want to reproduce in the future but are
unable to offer the required consent.
13. It is also recommended that the law
should ensure that gametes obtained unlawfully cannot be exported
To consider the composition, expertise and approach
of the Human Fertilisation and Embryology Authority, its code
of practice, licensing arrangements and the provision of information
to patients, the profession and the public
14. The procedure for public consultation
followed by informed decision making by the Authority, subject
to ruling by the Secretary of State (and parliamentary debate
via the Authority's Report when laid before Parliament), is a
key part of the Act. This allows public debate and improves general
confidence in the final decision from the Authority.
15. The responsibility of the Authority
to produce and revise as necessary a Code of Practice is also
important in providing both practitioners and people to be treated
with a standard to judge possibilities and constraints. It also
allowed the incorporation of ethical standards as well as "good
clinical (including counselling) and laboratory practice".
16. There may be merit, however, in considering
whether the values which underpin the Act should be clearly spelled
out in any revised legislation. This was done in the Adults with
Incapacity (Scotland) Act and may offer providers and intended
recipients with a clear message about the underpinning aims of
the Act.
ADDITIONAL INFORMATION
17. In responding to this inquiry the Society
would like to draw attention to the following Royal Society of
Edinburgh responses which are of relevance to this subject: Consent
and the Law (December 1997); Cloning Issues in Reproduction,
Science and Medicine (April 1998); Review of the Common
Law Provisions Relating to the Removal of Gametes and of the Consent
Provisions in the Human Fertilisation and Embryology Act 1990
(April 1999); Chief Medical Officer's Expert Group on Cloning
(November 1999) and Preimplantation Genetic Diagnosis (March
2000). Copies of the above publications and further copies of
this response are available from the Policy Officer, Dr Marc Rands
(email: mrands@royalsoced.org.uk) or from the RSE web site (www.royalsoced.org.uk).
May 2004
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